Custom Bed/Mattress Makers?

finalfugue Member Posts: 1

Hello all,

I am a 33-year-old male long-term (28 years) survivor of an inoperable spinal malignancy. Massive radiation therapy at 5 years of age damaged the upper thoracic/lower cervical portion of my spine. and much of it was wrenched into place and fused together for strength/stability ~18 months later. I am still functional and independent (praise whatever your personal beliefs would lead you to praise), but I do have significant kyphosis and scoliosis as well as hip and shoulder displacement. It's not quite a gruesome trainwreck, but it "ain't right" either.

I have had trouble for 15 years finding a surface on which I can get decent rest at night. I'm able to do well enough (with varying success) at higher-end hotels and can travel, but I haven't slept on a real bed regularly since the Clinton administration and my teen years. Right now I limp along on an ancient La-Z-Boy sofa I stuff and adjust with towels/clothes under well-worn cushions. I have *owned* many beds, however, which never worked for daily desk work life. I know many people have had success with Sleep Number, Tempurpedic, and high-end mass-produced mattresses, but I have owned ALL of them, and more, only to return, give or throw them away in the end. They put too much stress on my neck/head, cause muscle spasms in my left leg/hip, or otherwise end up too firm/soft compared to what I spend days evaluating in the store. All the misfires have cost me thousands and thousands of dollars. I'm not that dire a case and do not require the sort of dynamically adjusting air hospital mattresses used for bedridden cases trying to avoid pressure/bed sores, but the underlying concept behind custom support is similar. My holy grail is a normal bed for an abnormal person.

I have found a company in Buffalo, NY who claims they custom manufacture solutions for invalids, hospitals, care centers, and complicated medical cases. They have access to all the materials with which I have become all-too-familiar over the years, as well as a custom configurable siloed coil solution they claim they can tailor to my shape. They have said all the right things in phone conversations, and I am considering going to pay them a visit. The problem is I live near Seattle, and this would be an expensive undertaking. I thought I would ask here if anyone knows any other companies or contacts who offer what they are offering:

  • A "start with me" approach. One size fits most won't work in my case. I'm very short (5'3"), weigh very little (130 lbs), and have curves and lumps in weird places. Many companies make wonderful products tailored for the aggregate "average" person that are completely wrong for me. I have a job and a life to live. I can't spend months miserable and exhausted waiting for my odd little frame to hopefully break in a product built by the thousands for totally different people. I'm looking for someone with the knowledge and equipment to evaluate how and where my body produces downward force and to match that with appropriate, durable support without excessive upward pressure. This company claims they can do this, and have done so for medical cases.
  • Access to and history with working with a wide variety of materials. Maybe the adjustable coil solution will be what works best? Maybe it will be a PU/latex/down hybrid laminate construction? Maybe it's a non-Newtonian gel? Maybe it will be a sack of foam scraps and straw? If I knew, I would have solved the problem years ago. I need someone intimately familiar with how their product is constructed, and with the insight and experience to select whatever materials will work best and build something from scratch if need be.
  • Generous trial accommodations. I don't plan on buying anything again that will be a brand-new, different-from-showroom product delivered much later. This company claims they have worked with a local hotel and can set up the exact solution you'll be receiving to allow you to spend a few nights evaluating and commenting on it.
  • Reasonable pricing. My family is behind me as I try another hail mary to solve this, but none of us are rich. The plane ticket will be a birthday gift for me and their top-end solution (roughly $3500-4000 for a twin) will be a significant expense that will leave me budgeting for a long time to come. For my second lifetime miracle I could conceivably raise up to $10,000-$15,000, but I would have to be dead certain I'm working with experts on a lifesaver. Some purportedly custom solutions sold at swanky retailers with high marketing/prestige costs sail north of $20-30K or more. That's simply beyond us.

I have called spinal, orthopedic, chiropractic, and physical therapy specialists from here to San Francisco. At most I've gotten, "That's a good question!"- but no answers. A major Texas cancer research center that may not want to be named, but where I was a former patient, gave me a standard hospital bed supplier. Again, not what I'm seeking. Obviously this isn't a high-volume, high-margin business, so the specialists are very hard to find. If anyone has any contacts anywhere in the United States, please let me know. I would love to talk to them. If I'm willing to go to Buffalo from Seattle, pretty much anywhere is on the table. Thank you for reading and any information in advance.